Wednesday, July 2, 2008

Talking and Stoma's.......

Rhett is talking like crazy. The past few weeks he has gone crazy with his words. I am just tickled that he is doing so well, and so are his therapists. Speech is his strong area, and gross and fine motor are his weaker ones. We have kind of hit a snag in his walking, which the neurosurgeon tells me is due to his tethered cord. He is still walking, but he toddles like a baby that has just learned to walk most of the time. Espescially after he has been walking for a while. He still falls down alot too.

But he IS walking, and he IS doing well all the way around. This surgery has made a huge difference in his overall health. First of all he has been able to come off of his oxygen during the day. His saturations are around 98/99. This is huge. At night he is still dipping to the 80's but his cardiologist thinks it may have to do with his heart rate dipping so low. We might start him on a medicaton to help keep his heart rate up, but we will discuss it at his cardiology appointment this month.

Here is a little video of him saying some of his best words, that you can acutally understand, and not some of his "Rhett Language." He even shows you some body parts!! You'll have to excuse the mess in the front entry way, we order our pediasure only once a month, and just got our shipment today.

After the video, be forewarned that I am posting stoma pictures, so read and look at your own risk. Sorry if I gross anyone out.

Okay, so here are the pictures of his stoma. The first one is a good one to show you how far the area of redness stretches out. It's the best I could do with the disk in the way.....once again, excuse the mess.....this time on him. I hadn't cleaned him up yet, and he's not the biggest fan of adhesive remover. I wanted to take pictures before making him mad. Good idea eh?

The second one is where it's the reddest. (Is reddest a word???) Sorry I know it's graphic, but I could really use some opinions.

Know that as hard as these are to look at he is not bothered at all. He is doing belly flops off of the chairs onto the floor, and full of spunk more than he was before his surgery. The worst thing for him is being held down for his dressing changes. They don't hurt him or anything, he just gets ticked that you aren't letting him run around like a wild man for 10 minutes of his day. :)

Also does anyone use Desitin as a barrier cream? That's what we have been using and it is working GREAT!!


Kyle, Aimee & Ava said...

I love the video... It is so cute!As for advice on the stoma, I have no idea. You'll have to get that from someone other then me.

Ava has what are called hemangioma's (spelling unknown), she has 5 of them: chest, shoulder, neck, head and bum. Well, when she was about 6-months old, the one on her bottom abssesed and got very infected. They had me use Calmoseptine Ointment instead of Desitin as a barrier. It worked wonders! You can get it at any pharmacy and I would recommend it over the desitin anyday! Good luck... I am sure glad that Rhett is getting better! He looks great!

BiLlY, sAm, AnD bOyS!!! said...

use BAZA barrier cream!!!!! all I can say is that is the only cream that helps with Tayte's redness and sensative skin! we go through it like we do diapers (having twins that's alot of diapers!!!) the only place I have found you can get it is from your feeding pump supplies company!

Michelle said...

Wow, Rhett is really gabbing! He sounds wonderful!

Niksmom said...

What a sweet little chatterbox! :-)

It's hard to really tell from those pics but, honestly, it doesn't look as bad as I expected. It is still fairly soon after surgery and it takes quite a while for the stoma to "toughen up" and smooth over. But definitely ask the doc/nurse when you go for your next appointment.

If the Desitin is working I woulnd't change anything. We prefer the calmoseptine b/c it has a soothing agent. But...if it ain't broke don't fix it, right!

Also, if Rhett is beng super active and puts pressure on the site from climbing and playing, it will look more red than you might expect. Is it generally a bt better first thing in the morning? If so, and if the site isn't bothering Rhett at all, you can pretty much assume the redness developes during the day from activity and that things are ok.

Are you also using gauze to cover it ? We found that worked well for helping to absorb any drainage...espec. while the stoma is still a bit gooey. If you use gauze, make sure it's the "fenestrated" or split, IV-type gauze. It's softer and designed to go around tubing. Using plain old gauze you can get at, say Walmart, isn't great b/c it's looser weave and can leave particles when you take it off. That can contribute to redness and irritation, too, if there's a small bit of the thread stuck on the stoma and you don't realize it.

Becca said...

Fabulous video! Way to go, Rhett!

Imsavimsa said...

I also thought it would look worse by your description.

My sons stoma looked like that (from Sep07-May08) until we got the Mic-Key Button. Before that we cleaned with sterile water on a Q-tip and changed 2"x2" gauze, morning and night.

When he got sick (flue or other airway infections), the stoma area got "redder" and more stuff came out on the gauze.

Now with the button the skin is dry and normal skin color. And we don't need any gauze, and clean it only in the morning. It doesn't leak anything at all.

Kind regards,
Mia mom to Victor (Noonan syndrome)
Aland Islands, Finland

Kari said...

WTG Rhett. I sure wish Tristan were as cooperative. If I ask him to say things he usually will say NO. He does say alot but only on his terms LOL
Don't know much about stoma's I have cleaned a few when I was working but no idea from the photos if it looks fine or not. Sorry no help

Leah said...

Actually, it really doesn't look that bad to me! Angela's redness was usually an inch around the stoma. But, it was in the days before digital cameras! I'll get a picture of her scar now. Usually stoma scars look like a stab scar, but Angela's is much bigger than that. I think Rhett's just looks like normal wound healing to me. Also, remember that the nerve endings there have been cut, so he doesn't have feeling on the area of the stoma. The skin AROUND it can feel, but not exactly where the stoma is. That's why kids sometimes pull their tubes out with the balloon intact (Angela was an expert at this) because it doesn't hurt. It's also why they can lay on it, drag it on the floor, etc.

~Melissa~ said...

Oh my! He's doing so great. I'm so glad to see it!

Heather said...

Loved,loved,loved the video. He is so sweet and thriving and growing just as he should be! Stoma doesn't look too bad Pam,I'll reiterate what a few other mom's said. Stick with the desitin if that work.I think I mentioned before that we use calmoseptine. Works for Zoey so we stick with that.Give it time. It will get better and you will get to know when it is truly flaring up. Keep up the great work Pam. Your doing awesome and so is he.

RK said...

Yeah, I think it looks great, actually. We don't use a barrier cream at all, but we do keep a gauze on it to keep it clean. It's helped alot with the granulation staying away. It doesn't have much ooze but even a little can cause problems. I use the walgreens brand 2 x 2 gauze and just cut a slit in it then tape the slit closed to stay on. It's been great for keeping hers in great shape with the button.

Jen P said...

God Bless You!

What a cute video. It does just wanna make you hug him doesn't it? My kids would love those PJs too (They call them Jammy Jams). He looks like he is doing great...keep it up!

Childlife said...

So great to hear Rhett talking so well Pam! Sorry I've been MIA for a while -- I have been keeping up with you in my reader :)

His stoma looks pretty good to me -- it will look better once he gets the mic-Key in. We never used Desitin -- we used four ounces of aquaphor compounded together with one packet of colestipol powder. The colestipol is actually an anti-cholesterol agent, but it is super absorbent and does an incredible job as a barrier.

We've been told by doctors everywhere we go that Jacqui has the best looking stoma that they've ever seen. We've had no problems with granulation tissue since we started using it so she hasn't had to have any removed with silver nitrate since she was two.

I just got a couple empty four ounce jars from our pharmacy, bought a 16 oz jar of generic aquaphor ointment, explained to our Ped what I wanted to do and asked him to just write a prescription for a box of colestipol with the instructions 'use as directed'. A box lasts us a year.

I wouldn't change anything if the Desitin is working for you -- just something to keep in mind if he starts having trouble with granulation tissue.

Great to see him doing so well!